A.H. MANIAOL, C. TALLAKSEN

DEPARTMENT OF NEUROLOGY

OSLO UNIVERSITY HOSPITAL, ULLEVÅL

A questionnaire for assessing the impact of socio-economic factors in MG

Determinants of health

o Socio-economic factors

o Environment

o Health behaviours

o Biological and personal factors

ECHI: European community health indicators*

*The ECHI project; health indicators for the European Community; www.ec.europa.eu

Determinants of health

o Education

o Occupation

o Employment

o Poverty and income distrubution

Socio-economic factors

o Socio-economic factors: social and economic factors that characterize the individual or group within the social structure

o Socio-economic status (SES):an individual `s or group`s social and economic position within a hierarchal social structure, measured by socio-economic factors

Measure SES

How could socio-economic factors affect health?

o Mediators:o Social: education,

occupation, living conditions, lifestyle…

o Economic: health-care access, payment of medications..

o Psychosocial : emotions, stress, depression, anxeity

o Biological hypothesis?

Ref. Socio-economic status and health, a neurobiological perspective•Roy J.; Medical hypothesis(2004) 62, 222-227

Ref. Socio-economic status and health, a neurobiological perspective•Roy J.; Medical hypothesis(2004) 62, 222-227

Low SESPsychosocial stress

↑ autonomic and neuroendocrine response

Immune system ↑↑

infection, diseaseautoimmunity ?

Post-stress

Modifying factors in MG

Environmental factors

Genes Immune system

Myasthenia gravisMyasthenia gravis

Demographic and socio-economic factors

Smoking

Diet

AlcoholStress

Infections

Hormones

Drugs

?

Socio-economic factors in MG and other autoimmune diseases

Disease Prevalence

rate per 100 000*PubMed Medline EMBASE

Type 1 diabetes 300-600 643 618 209

Rheumatoid arthritis

300-800 675 597 218

Systemic lupus erythematosus

30-100 205 162 137

Inflammatory bowel diseases

100-200 (CD)

150-290 (UC)

237 216 14

Multiple sclerosis 100-180 403 362 102

Myasthenia gravis 8-15 11 8 6

Search terms “socio-economic factors” and “disease” and hits in databases

*Recent prevalence data for autoimmune diseases; G.S Cooper et al./ Journal of Autoimmunity (2009)

Socio-economic factors in MG

Few MG studies have reported the influence of socio-economic factors

o Social aspects in Myasthenia GravisL. Kaukiainen et.al Acta neurol.Scan 55, 377-384, 1977

o 210 of 240 (88%), prevalence 5,2 per 100 000 (1975)o more intermediary-school and university level o higher social classo greater part live in urban areas

o A study of social, medical and emotional problems in 26 patients J. Sneddon, Lancet 1980;1;526-528 1977

o 26 of 30 answered a questionnaireo Social factors, stress, temperature seemed to have an

impact on disease onset and courseo But, this study should be considered as a pilot study

Socio-economic factors in other autoimmune diseases

Disease Socio-economic status (SES)Type 1 diabetes - Low SES poor glycemic control, psychiatric -and eating

disorders, impaired QoL

Rheumatoid arthritis (RA)

- lower SES increases risk RF-pos RA (not RF-neg RA)

- Increases risk 40% without university degree

Systemic lupus erythematosus

- lower SES worsen outcome and prognosis

- lower SES increases mortality

Inflammatory bowel diseases (CD) (UC)

- lower SES increases risk UC, not CD

- higher SES increases risk CD!

Multiple sclerosis -higher SES (urban areas), lower SES (rural areas) increases risk of disease, affects hospitalization and comorbidity

Type 1 diabetes:•Hassan K, J Pediatr 2006 Oct;149(4):526-31• Kakleas K, Diabetes Metab 2009 Nov;35(5):339-50

Type 1 diabetes:•Hassan K, J Pediatr 2006 Oct;149(4):526-31• Kakleas K, Diabetes Metab 2009 Nov;35(5):339-50RA:

•Liao KP, Curr Opin Rheumatol 2009 May;21(3):279-83.

RA:•Liao KP, Curr Opin Rheumatol 2009 May;21(3):279-83.

SLE:•Meller S, Autoimmun Rev 2005 Apr;4(4):242-6.

SLE:•Meller S, Autoimmun Rev 2005 Apr;4(4):242-6.

MS:•Marrie R, Mult Scler 2008 Sep;14(8):1091-8• Lowis GW, Sci Total Environ 1992 Sep 11;126(1-2):139-64.

MS:•Marrie R, Mult Scler 2008 Sep;14(8):1091-8• Lowis GW, Sci Total Environ 1992 Sep 11;126(1-2):139-64.

Inflammatory bowel diseases:•Li X, Inflamm Bowel Dis 2009 Apr;15(4):608-15• Nahon S, Inflamm Bowel Dis 2009 Apr;15(4):594-8

Inflammatory bowel diseases:•Li X, Inflamm Bowel Dis 2009 Apr;15(4):608-15• Nahon S, Inflamm Bowel Dis 2009 Apr;15(4):594-8

......Socio-economic factors in other autoimmune diseases

o SES important environmental modifying factoro SES affects

Risk of disease Disease outcome Mortality Comorbidity Risk of hospitalization Health related quality of life (HRQoL)

o Other environmental factors related to SES: Health behaviors (smoking, alcohol, diet) Psychosocial factors (stress, depression, mental health)

How to develop such a questionnaire

o EuroMyasthenia 2006-2009o Aim of questionnaire:

Self-administered MG specific Feasible for patients Standardized in clinical characteristics Standardized in assessing health determinants (ECHI) Valid and reliable Easy to adapt and translate for collaborative partners Suitable in large-scale epidemiological studies

How?

How to develop such a questionnaire?S tage1: Development of a draft questionnaire

Literature review and question development

Stage 2: Pilot study of 68 MG patients

57 participants tested and gave critical feedback

Stage 3: Validity and reliability tests

Self-made MG specific questions

Content validityItem selection/reduction

Specialist advice

Patient comments

Test-retest reliability4-6 months interval

28 patients included (first responders)

24 participated (n=24)

Criterion validitySpecificity and sensitivity

MG questions of symptoms at disease onset (n=24)

Questions modified according to resultsEstablishment of a final version

How to develop such a questionnaire?

o Socio-economic status* Education Occupation Income Employment Disability

o Health behavior* Smoking Alcohol Drugs Coffee, tea, vitamins Physical activity

o MG specific questions Onset Clinical characteristics Disease severity Treatment Comorbidity other

autoimmune diseases Follow up Disease information Women

Already validated questions Questions to validate

Results*www.ntnu.no/hunt/inenglish

How to develop such a questionnaire?

Modifying questions of MG clinical characteristics

Pilot version:

Final version:

Test-retest reliability

00,10,20,30,40,50,60,70,80,91

Symptoms of regional muscle weakness

Kap

pa (9

5%C

I)

Question 21a

Question 21b revised

Final questionnaire*

o Valid and reliableo Measures environmental

factors (SES)o May be combined with QoL

questionnaires, depression scale etc. psychological aspects

o Suitable for large-scale studieso Easy to translate and adapto Designed in Cardiff TeleForm

software; direct scan into a database

*Submitted for publication in Neuroepidemiology

Future aspects

o Use the questionnaire in larger-scale epidemiological studies (case-control, cross-sectional)

o Norway: On-going postal survey from Nov. 2009 All MG patients in Norway (515) HRQoL included 3 week response rate: 240

o Adapt and translate to other languages Reproduce epidemiological findings Compare data between countries

o Genetic-environment studies, epigenetics

Conclusive remarks

o The impact of socio-economic factors and other environmental factors in MG are still unknown

o The questionnaire for assessing these factors is now ready!

o Collaborative networks are essential

Acknowledgments

o Sonia Berrih-Aknino Nicole Kerlero-de-Rosboo All associated and collaborative partners in the

EuroMyasthenia Networko MG patients in Norwayo Funding: The Norwegian Association for patients with

muscle diseases